Table 1

Barriers and strategies to enhance PRP involvement in rheumatology research

ConceptBarriersStrategies to enhance patient involvement
Emotional and personal factors
  • Emotional burden

  • Fatigue

  • Need to accommodate PRP needs (physical and knowledge, level of involvement)

  • Lack of trust

  • Time and budget constraints

  • Provide a supportive environment

  • Provide flexibility and accessible accommodation

  • Allocate adequate resources

  • Practice active listening

  • Recognise PRP contributions

Communication and relationship
  • Feeling unheard

  • Power imbalance

  • Inconsistent and poor communication

  • Loss of confidentiality

  • Use of medical jargon

  • Appoint a coordinator to facilitate PRP involvement

  • Clarify patient roles and objectives

  • Exchange mutual expectations early at project initiation

  • Avoid complex medical terminology

  • Ensure open and transparent communication

  • Ensure feedback and trust

Training and support
  • Lack of awareness about PRP involvement among researchers

  • Overburdening of PRPs

  • Inadequate training and support of PRP

  • Lack of resources and compensation of PRP

  • Increase awareness about importance of PRP involvement

  • Allocate resources for patient engagement

  • Provide proper training tailored to PRP needs

  • Provide training and support to researchers

  • Appropriate recognition of PRP

  • Encourage PRPs to ask questions and express needs

  • Communicate workloads

Research process and pace
  • Challenges to recruit PRPs

  • Time commitment for researchers

  • Anxiety about delays in projects

  • Higher demands on resources

  • Forced changes in working practice

  • Address recruitment challenges

  • Establish realistic timelines

  • Manage researcher and PRP time commitments

  • Build trust through open communication and demonstrate commitment to research progress

Collaboration and engagement
  • Lack of PRP diversity and representativeness challenges

  • Discrepancies in views

  • Uncertainty in incorporating patient experiences

  • Risk of sharing data prior to peer review

  • Discuss representativeness and diversity of PRPs within research team

  • Involve PRPs from project inception and clearly define their roles upfront

  • Discuss and address discrepancies

  • Co-create PRP contracts to ensure confidentiality

  • PRP, patient research partner.